Health Update in Three Parts: One

Author: Vivid Muse  //  Category: Family, Fibromyalgia, Health, Mental, Whining

Playing catch-up here, while my brain is clear from both migraine and fog.

After the first of the year, my doctors switched up my medications again, still seeking the perfect “cocktail” for resuming some semblance of normalcy and income generation. The order may be wonky, because my memory in that period is foggy.

  • I was given a prescription topical lotion from “Innovo” to use on “hot”/pain spots. It works, but has problems that greatly limit its usefulness, and was actually a bit scary a few times;
  • I was given a pain patch (Butrans) that made me tremendously ill and weak and was taken off of it after one month, so gnarly were the side effects;
  • I was taken off Vicodin and prescribed Percocet, because I was getting migraines with nearly every dose of Vicodin I took, with nothing else to fight the pain with, because…
  • My neurologist ruled out Tylenol, Advil and Aleve several years ago, along with a daily med that my GP and Rheumatologist have asked about several times, and his answer has always been that it’s unsafe in combination with (mild) cardiac issues and other Health Blahs. But…
  • When I asked him to explain again the limitation so I could explain it to my Rheumatologist earlier this year, he reversed his decision on all four drugs after we discussed everything I’d tried and reviewed my chart again;
  • He also told me that he couldn’t prescribe anything to help me with my migraines until my Rheumatologist and I “work out the Fibro pain issue without drugs that trigger migraines.” To our faces. With a straight face. After 4 years of him being my neurologist. Shocked doesn’t even begin to cover it.
  • He then took away my safety blanket prescription for Soma and I’m pretty sure I cried on the drive home, but again, brain fog. (Yes, it’s actually called Soma, Brave New World readers. And yes, it makes you go to sleep just as peacefully and stupor inducing.)

I called it my safety blanket because I knew that no matter how bad any of my pain got, Soma would let me sleep through it, which was an immense improvement to my quality of life and sanity. I always used it judiciously, since it worked and I needed to not build up a tolerance to it. I could lose the pain, at the cost of time with friends and productivity (HA!), but I decided when. I had control, in the worst cases, with this.

It felt like a long-time friend broke up with me, his claims were ridiculous to my ears. I wanted to scream and cry and throat punch, all at the same time, because every single prescription I’ve been given since “shit got real” 4 years and 8 months ago by him, has had migraine warnings, along with the other symptoms they were supposed to be fighting: dizziness, fatigue, nausea, vomiting, drowsiness and a predisposition for fainting and pretty much every combination of digestive trauma you can imagine. ‘Nuff said.

After the Butrans pain patch FAIL, I was prescribed Nucynta around March. The good news? After the Lyrica wean-down had it out of my system, I discovered how much of a fog Lyrica kept me in, on top of the other medications that I take, either daily or for other pain. All but the high cholesterol meds (more genetic FAIL, for me but hopefully not my sons.) have been tweaked or removed, so I think it really was the Lyrica that carried the brunt of it.

I had a brief wean down from it, then started a new daily, Nucynta, and while it did little for pain, it had less of a “dumbing down” then the Lyrica had. I was able to comprehend things better. In many, it was like I finally learned English again and was able to do a lot with being able to understand and reflect on the differences. You know the distorted “funhouse mirrors?”  That’s what sentences and conversations were like, of those that I can clearly recall. I learned from attempts at “tricks” to make myself productive and began new patterns based on my new understanding of my disabilities.

More on this in the next part. Migraine calling.

 

 

I Never Did Get the Hang of Thursdays, aka Health Update

Author: Vivid Muse  //  Category: Health, Too Long For Twitter, Whining

I went to write a brief message in Facebook, and it turned in to something I’d rather not force in our kids’ faces. They likely know where I blog, so if they want to, they’ll see this. They don’t need me to trigger their worry and if they want to know more, here I am. ‘Sides, my stuff isn’t terminal or life threatening, it’s just pain.

So, Thursrday was ridiculous. I had an appointment with my neurologist about 50 miles away. I woke in a ton of pain, but I only take my daily meds when going to a pain specialist (neuro). I want them to see me at my base level, with no pain breakers. I forgot how hard that was, as physical or psychological stressors wonk my body/brain out, and I ended up tossing my cookies on 95 south. Luckily, commuting to DC during two pregnancies long ago perfected my technique, and a short while on the shoulder later, we were back en route.

The nausea I’ve been sporting since the new pain relief the rheumatologist patched on me has been pretty hefty. I underestimated the amount the nausea was masked by the other medications. Because we spend a LOT of time in the car, I had the necessaries for cleaning myself up and off we went. Due to our delay, there was a gnarly bit of drama at the doctor’s office danced on my exhausted last nerve, but there is a ray of hope there, although not in regards to my treatment.

I was hoping for another script of the expired, Final Tier of pain relief, Soma. That’s the one that lets me sleep, immediately, regardless of the pain level AND wake woozy, but feeling rested. It’s the last resort/emergency chute in my pain relief options, because being unable to sleep because it hurts too much is crazy-making. Immensely crazy-making. No go, as he’s concerned about them with the muscle relaxer in my medical bag.

I’m grateful to not risk overdosing, but not knowing if the impossible pain may happen on the patch is scary. I’m sure I’ve mentioned that I carefully rotate the medications, and only when in Hawai’i did I allow myself to take the max allowable. I fear addiction and/or accidental overdose, but without any safety net? Crazy-making.

The treatment option he was pushing most was injecting Botox into my head, and the gesturing he did seemed awful and my neuro ship sailed. That pretty much describes the sensation I feel when something bumps up against my neuro triggers, it’s like a boat launching, a slow but lifting, lurch. I have to proactively halt the trigger or I’ll be flailing. For similar reasons, needles are a problem for me, and fainting has occurred (Have I mentioned how much I hate being swoon-y? Well, I fucking do. Being fragile blows.)

Doc was getting more and more a boner about a place in Reston that does the botox treatments, and I finally had to stop him because I was getting worried about the fainting sensation coming on. By that point, I’d been up six hours, after almost the same amount of sleep and almost all of those were involved in some sort of panic attack.

I was exhausted.

I finally told him that the thought of those needles filled with botox scared the shit out of me. He did nothing to reassure me and launched into the risks, and the whole thing leaves me confused. I have to man up and overcome the fainting issue (if I can) before I can take on acupuncture, let alone dry needling (different from acupuncture? more research once needle issues wrangled.) OR stabbing botulism into multiple locations in my head every three months until ???. AND a second opinion, as the risks are not insignificant.

But the neuro’s final prognosis seemed to be to be that we (my rheumatologist and me) need to make the Fibromyalgia pain stop so I can stop taking all the medications that cause migraines, so he (neurologist) can treat the migraines themselves. I had to remind him that I was sitting there because of the migraines that were occurring before the Fibro flared up and the pain meds for it started. My husband and I went to talk migraines pain management and function restoration, and he kept routing back around to the Fibro meds.

Kinda pissed me off, to be honest with you. I don’t want to be on ANY of these pills. They are toxic and result in my having to have frequent liver check-ups. They make me sleepy and no matter which ailment I’m treating, they worsen the other side of the coin of my symptoms.

If I were going to get a magic wand waved, I’d also make the migraines begone, genius!

All those hours in the car took their toll, and while I’m grateful for the relief I know I got, I’m thinking twice about the patch long term. I don’t like not being able to take on the pain to be clear-minded enough to drive myself to get a prescription, or milk, or whatevs. I can’t just snatch it off and on, like I can skip pain meds to be clear minded in the hopes of driving. It doesn’t always work, but it makes me less nuts. Independence is my fight against isolation, dammit. But I’m learning about the balance of pain and clarity in winter and the lesson is? Kaua’i is much kinder to my body in winter than Northern Virginia is, but this is where I live. Make it work. Make it so.

Another lousy thing is that my olfactory senses are apparently off the hook, so all I smelled all day was the odor of the morning’s roadside purge. It soured my mood for sure and kept the nausea close by all day. But…

Silver linings: My Viking. A golden blaze of awesome glory in the driver’s seat, Chooch. The talking, hand-holding, the positive but stern looks necessary to strengthen me, sharing media, our fussing, and our planning our way through a myriad of complications and giggles. There are always giggles.

Life would be mighty dark without the golden light he radiates. Even when we disagree, I know he has my back. And he knows I have his.

While we were in the area, we got to see our Eldest son. He has a place with his best friends, and we drove over to say hi before he had to go to work, started managing some collegiate stuff, deliver some new linens (hush, I’m his mom) and finally got to meet their new kitty, Mowgli. I love the name, since Eldest loved Jungle Book so much when he was wee. Sweet, cuddly kitty that likes to play rough suits the house to a “T” (tee? Meh. You know what I mean, right?). No pix, as I forgot my phone in the car. (Derp!) But I swear it happened! <3

I didn’t make the eye appointment, but did manage to see a friend who’s on a rough road. You know me, I’ll happily keep squinting to share a hug.


Virtual hugs, prayers and/or kind thoughts for all those that have muttered,”Fuck cancer.”

Help, I’m Alive by Metric

Author: Vivid Muse  //  Category: Music, Too Long For Twitter, Whining

Diving in to their discography, I’ve found the lyrics and energy of the band Metric exceedingly cathartic. Just now, while I was stuck in my head again on a sadness (a while back), I started playing on shuffle again, and because I’m crazy as a loon, I haphazardly decided that whatever song they played, I would take it in and seek catharsis on it through their lyrics. View it through Emily’s lens, so to speak, since she has so often said what I needed to hear. Here’s what they served me up with:

“Help, I’m Alive”

I tremble
They’re gonna eat me alive
If I stumble
They’re gonna eat me alive
Can you hear my heart
Beating like a hammer
Beating like a hammer

Help I’m alive
My heart keeps beating like a hammer
Hard to be soft
Tough to be tender
Come take my pulse the pace is on a runaway train
Help I’m alive
My heart keeps beating like a hammer
Beating like a hammer

If we’re still alive
My regrets are few
If my life is mine
What shouldn’t I do?
I get wherever I’m going
I get whatever I need
While my blood’s still flowing
And my heart’s still
Beating like a hammer
Beating like a hammer

Help I’m alive
My heart keeps beating like a hammer
Hard to be soft
Tough to be tender
Come take my pulse the pace is on a runaway train
Help I’m alive
My heart keeps beating like a hammer
Beating like a hammer

If we’re still alive
My regrets are few
If my life is mine
What shouldn’t I do?
I get wherever I’m going
I get whatever I need
While my blood’s still flowing
And my heart’s still
Beating like a hammer
Beating like a hammer
Beating like a hammer
Beating like a hammer

Help I’m alive
My heart keeps beating like a hammer

(Lyrics provided by www.azlyrics.com)


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Resulting Mood: Being zinged by loved ones is something I was raised on. I’ll survive this. In fact, I called its certainty ages ago and have been upgrading my emotional armor. I just thought dark times had passed and that the sun was starting to peek out of the clouds. Silly optimist is silly.
Silver lining: No more energy/love wasted where it’s not appreciated. And yes, I know I’m nothing special. Just your average everyday human that is happy to know where she stands with people. 
Lesson re-learned: I simply must listen to my instincts, they rarely steer me wrong, in hindsight. Stop being afraid to reveal my super embarrassing non-traditional geeky side. Those that reject don’t get to laugh over it with me. Always give a second-chance (or third, or twentieth), so long as it’s DESERVED.

November 1st, In Great Detail

Author: Vivid Muse  //  Category: Breast Cancer, Hauntings, Mom, Whining

Lots going on, kittens, but I am still determined to clear out my Draft posts. Only relevant ones, natch, and I decided to go from oldest to newest. I flinched and nearly fled from this one during editing, but for reasons I won’t explain here, it is miraculously timed.

The last edit date was mid-November, 2010. It’s very, very stale but I’m powering through it because I don’t want to ever have to remember it in detail again.

Apologies for the scattered nature as I try and capture the chaotic and ancient thoughts to pin them down to the page. I don’t know why I started writing about the bittersweet nature of my wedding anniversary the way I did, but I’m honoring my old draft by way of keeping the format and filling in holes.

I’m also creating a Kamikat Alert to warn when emo is flowing freely. I give this one the highest possible. I’ve been crying nonstop while reading/editing it.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

On November 1, 2002, Chooch and I went on our first official date. The following summer, we became engaged and then my mother told us her cancer had returned. A few months after that, we married. Completely by accident, we were married on the same exact date, a year later, on November 1, 2003. (When I say by accident, I mean it. Chooch would have to confirm, but I think it was well after our first wedding anniversary that we realized that it was a double anniversary.)

In the fall of 2005, my mother was over two years into her second occurrence of breast cancer. Nothing had worked, and as a last resort she had pushed really hard to get into a clinical trial for a new medication that was in its first round of human trials. She was that determined to live. I watched her fight like a battle-hardened warrior, but she couldn’t beat it alone. She needed the medical community to fight for her, too, so she got them.

This chemo ‘cocktail’ was particularly nasty, and while I won’t go into details beyond that, we realized too late it was killing her instead of the cancer, which continued to grow and spread. She was hospitalized in early October 2005 because her body functions were shutting down. At the time, it was just one more hospital trip that I drove her to, in a very long line of them in the few months since I quit school to help her and my dad as they were overwhelmed and I worried for my dad’s health. I am still haunted by the fact that when she walked into the emergency room that day that we had no idea that she would never go home, or that it would be the last few steps of freedom she would ever take.

Her body barely recovered and we almost lost her at one point. She went in and out of a sleepy/coma-like state and lost the ability to walk. She slowly emerged and then on November 1st, we finally got the answer we were bugging her oncologist for – we were told that there were no treatment options. One of us must have asked what was next, if not chemo, because he started talking about “making her comfortable” and “managing her pain” and that he believed she may have as long as six months to live.

As was common at this point, Mom and I were alone when we got the news and after he left us we grieved as you might expect. We clung to each other and wept. I reassured her and she reassured me. I don’t really remember much more of the day. I know we told my dad, but I don’t remember it. I got home that night, and don’t remember much other than picking up the phone to resume my usual evening activity after spending time with her during the day — spend the next few hours on the phone with my siblings and Mom’s siblings and whoever else wanted an update. I knew I was lucky to be able to help her and it was important to me to relay the news, in whatever detail they needed, to family and friends.

The first person I reached was my Mom’s sister. Needless to say, this particular pronouncement required an excruciating retelling of every detail. She knew that I would be on the phone with this news for anywhere from 2 to 4 hours, explaining, reassuring and relaying requests and information to and from my Mom.

Mom’s sister offered at some point to make the calls so that Chooch and I could find some time to celebrate our 2nd wedding anniversary, which was also that day. I was hesitant, but also in desperate need for a reprieve from it all.  I agreed and she promised to call my brother and sister as well as her brother. I didn’t know how much I needed to not be the messenger of this particular message any more, until she moment that she took the task from me.

Tangent: I can still remember seeing the bag of candy she had on her hospital table as we talked about what the oncologist talked. The day before had been Halloween, and she’d wanted to have candy to give out in case any kids that were stuck in the hospital were trick or treating. To my knowledge, the only trick or treater she had was my son L.T. He was eight years old. Once in his costume, we went to visit her again and she loaded him up. When I looked at that nearly full bag of candy the next day, I was thinking how impossibly wrong it was that her last Halloween was spent in the hospital. She always loved Halloween and the joy it brought kids, all kids. I still wonder if that thought occurred to her, too, the next morning as we hugged, cried and tried to make sense of it.

Back to my wedding anniversary night, and not even an hour passed before I got a call from my sister. I don’t even think we’d had time to decide whether to go out to dinner to celebrate or order in and coccoon. My baby sister (9 years younger) was crying inconsolably from my aunt’s call. Some of the information got confused and it scared the living hell out of her. At the time, my sister was living with her husband was in the Army and stationed in Texas while all the rest of us were in Virginia. She carried a lot of guilt about this, and it’s possible she still does. I really wish I could take that from her. Mom was over the moon that my sister was starting a new life married to the man she loves, rather than sitting in the hospital room, watching as she wasted away. Their mother/daughter bond was so strong, she never once questioned my sister’s love or loyalty. In typical fashion, Mom saw beyond herself and could only grin with joy for the happiness sis found and still finds with her husband of now nine years.

But when I heard the terror in my lil’ sister’s voice, I was immediately shamed. Yes, of course, I realize that I was entitled to a night off to catch my breath and stay sane and have some joy for ourselves. Just not at this price. I was grateful that she called, as the thought of having gone off for a romantic dinner while she sobbed desperately would have haunted me forever. Chooch and I agreed that it was more important that I untangle the information. I don’t even remember what exactly it was that upset everyone, it’s too deep in the shadows.

I soothed my sister and called my brother. Sure enough, he was reeling, as well. I again went over all the information and gave reassurances. I then called my mom’s brother and cleared up his questions. Finally, I called Auntie, to reiterate the information to her to make sure she understood, because what she relayed wasn’t completely accurate. I was frustrated, but never at her. After all, she’d just found out her big sis was really and truly dying now, of the same thing that took their mom and their grandmother before that. Her intentions were the very best and I remain grateful for the love she demonstrated by trying to give me a night off.

Hours later, I finished the last call and vowed to myself to never delegate that job again. Somehow, when there was something that needed to be done, I was able to push my fears and horror at what I was hearing and seeing to the side and get things done. Maybe it was because I was the one “in the trenches” with Mom, and in every way we were at war. It was every day.

A few days later, my parents celebrated their wedding anniversary. My dad snuck a bottle of wine into her hospital room and they had as romantic a dinner for two as possible. It was hard, lifting the mood before I left, but we all did our damnedest. I can’t imagine how bittersweet that dinner was, and I love them so much for celebrating their last anniversary.

Do you want to know what I think was the hardest? The cancer was already in her bones, had spread to her Mom’s skull, and we believe, to her brain. We aren’t sure because the scans and most non-life-supporting testing stopped. When it’s terminal, why continue putting her through it? We already knew from DNA testing that it was the breast cancer from 1991. It had returned and was in her colon, bones, stomach and skull. We knew she was going to die, just like her mom and her grandma had, from breast cancer.

Our suspicion that it spread to her brain was because she started losing memories, when her mind had always been sharp as a tack. Just another horrible degradation before she dies, why not? Grateful that you still have your mind while you’re dying from cancer and unable to walk? Not for long, with this disease. It’s when I first got a taste of the cruelty of a failing memory, at least as I experience it. You don’t get to choose who’s face you’ll forget. Hell, you don’t even get to remember that you forgot them to apologize later!

But the possible spread of cancer to my mom’s brain was confirmed, in my mind, by her question upon my arrival one day. The only silver lining was that LT was not at my side as he frequently was, since it was a school day.

Her question? When her oncologist would be coming to meet with her about resuming her chemo? The cancer was growing unchecked while we did nothing. Would I call him to her room to discuss it?

I froze. I blinked. The words made no sense. Wait, I thought, what’s wrong with my brain? Nothing. I just couldn’t accept what her question meant. Tears sprang to my eyes. She didn’t remember the death sentence she was given, weeks earlier. I don’t even think I took a breath.

I wanted to say, “Okay, Mom. I’ll get him here as soon as possible. Want a pedicure? How was breakfast?” Deflect, distract, redirect. Sure, it would be a lie. But it seemed like a kindness. Maybe she’d remember on her own? Was that kinder? Maybe, but I feared what would happen when she found out the truth. In my mind, it was more cruel to waste what little time we had left with deception and lies. She took great pride in being a strong woman. She hated lies and had never been a delicate flower in need of babying. She was NiNi, Warrior Queen, and she hid from nothing. Khaleesi, would’ve been more fitting, if she’d known the reference.

Yet… silence. No words came out. Just her looking up at me with those beautiful, trusting eyes.

Ah, yes, another blow, just so. I immediately understood. Our roles had switched. She was the innocent and helpless one now, and I was the one in charge (by family agreement) of protecting her. Keeping her safe. Casting out her fears. Comforting her.

But, how? She was my touchstone and my source of unconditional love, my central support beam my entire life. She was my mommy! Then, when I needed her more than I have ever needed her, to be stronger than I could ever hope to be on my own, I couldn’t reach for her hand to comfort mine.

In my head, I screamed, cried, kicked and fought against it all.
I refused.
I would not do it.
No way am I strong enough.
Nope, the doctor can come back and tell her.

Instead, I found myself holding her hands in my shaking ones as I told her, again. We cried as we had the first time, because to her, it was the first time. I don’t even know what I felt. I just curled up with her on the hospital bed, tightly clinging to each other, with vigilant and respectful eyes checking on us from the door from time to time by the palliative care staff. We grieved again.

And when she asked a few weeks later, I told her again. It’s foggy after that, I don’t know how many times I had to tell her, in total. I’m grateful that I was there for her, but she was drifting further and further away from me, one shimmery silvery wisp at a time.

By way of bringing it current, and possibly to a point (*gasp*), the intervening years has let go of our anniversary as a bittersweet day. I do think of Mom, but instead of sadness and tears from the hospital room, I now see her laughing and smiling with us at our wedding. I picture she and Chooch killing the bottle of Dom when my parents toasted our engagement. (Damn, she was adorable tipsy, although I rarely saw it.) I remember her teasing me that Chooch was using me to get to her because they were the true soul mates — straight faced and with a wickedly cocked eyebrow, as only she could do. And letting me know what I needed to know most, because she knew the three of us (my two sons and I) better than anyone else: that she approved of him as my husband and as step-dad to my sons.

She told us in a hundred different ways that she thought he was right for me/us, but most poignantly when she asked us to move up the wedding to ensure she would be alive to attend. We did, and she did. It was a chaotic and magnificent day that I treasure all the more because she was there. She was beatific, at peace over my sons and I with Chooch in our lives and the knowledge that my sister would be soon married to the love of her life. My brother and his wife were happy and strong. Everyone else was healthy. What more could a mother need to know before she dies?

She passed away in the wee hours of January 13, 2006, a little over three months after that walk in to the emergency room. She was 62. She and my father were together over four decades. She had three kids, seven grandkids and, since her passing, three great-grandkids. She wrote, painted, baked, worked gardened, taught, played and gave hugs that could make you forget why you needed one in the first place.

 

I’ve reclaimed November 1st as the celebration of love and family, as it’s intended. Chooch and I celebrate our love, our bond and our marriage, with number 10 later this year. Times are chaotic, but our love is like Valyrian steel baby, folded a thousand times in fire. Besides, Mom would kick my ass if I let anything get in the way of celebrating our anniversary. She certainly set the example on that one.

There are several songs that are intertwined with Mom in my mind. This is one of the most powerful. I didn’t find a video by Colin Hay for the song I first heard on the Garden State soundtrack, but this is my favorite of the fan submitted videos I viewed. I almost didn’t include it for fear of being accusations of being maudlin, overly sentimental or pity seeking, but…

Fuck that. I really miss my Mommy today. I’m going to treat my broken heart to a good cry.

“I just don’t think I’ll ever get over you”
Song by Colin Hays, formerly of Men at Work
Video submitted to youtube by EmjayTulip.And as always, Mom was right. Chooch is my soul mate. No one else could have given my laugh lines and wrinkles in the intervening years.

Distortion Filters Don’t Mean I’m Wrong

Author: Vivid Muse  //  Category: Fibromyalgia, Health, Too Long For Twitter, Whining

 

Body
Fibromyalgia is one of my diagnosed Health Blahs. I won’t go in to detail here other than this focus – a kind of pain distortion. There’s a neurological aspect of Fibro that allegedly “turns up the volume” on pain.  It’s a sort of biological input distortion filter that is described as a stereo having the volume tuned up too high. This is a confusing concept, as people are likely to dismiss my pain, thinking it’s all in my head. But I assure you, the pain is real.  And for me, it’s not even measurable, as in, “The pain should only be at a 4, but we can add another two points for Fibro distortion, for a total impact on the patient of 6.”

Whether caused by the immeasurable “volume” increase or actual pain, it hurts just the same.

Why?

Because pain is pain is pain is pain. 

The frustration is tremendous as what I report to the medical community sometimes gets taken apart and evaluated like most others don’t have to tolerate. “Oh, it’s the Fibro amping up the pain, you’re ok.” Or, “Keep in mind that Fibro distorts the pain, what is your pain level separate from that?”

Okay, how about I ask you, “Knife or spoon? You are going to be stabbed with one, and you get to choose. Obviously, you want the one that hurts the least and/or does the least damage. So, which do you choose?”

A spoon will hurt more but won’t go as deep, as easily. A knife will cut an artery, but how much pain will you feel?

Does it matter?

Sometimes, yes. In my experience, the standard 0-10 pain scale (smiley to pained faces on a chart I’ve seen in every ER and hospital room) works like gangbusters, especially when you have a doctor that will actually spend more time listening than their typically double-booked schedules usually allow.

 

Mind

About a year before that diagnosis, my therapist T-Pain, told me I have distortion filters on things I experience, both input and output, that impact my emotional well-being and create conflict with beloveds. The destructive power of these filters is immense and also far more common than I previously believed possible. Meaning, I’m not the only one with them, I’m just the only adult I know that has had it named (and admits it).

Essentially, I hear things (input) in such a way that I attribute all blame, shame or guilt to myself. All bad things are my fault. I do nothing well, and I am a constant disappointment to those I love or those foolish enough to love me.

It also means that at times I have problems communicating (output). My reactions: awkward, stammering, emotional, clumsy, partial, incoherent or circular in logic. The higher the stress, the worse the reaction.

Over a year ago, when my therapist helped me understand what I’m processing isn’t always what people intended to convey, I was thrilled.

Let me tell my loved ones, I thought, so they may allow me a bit more processing time to ensure that I’m expressing what I intend to express. Communication will be easier. Everything is based on communication, so everything will be easier.

A whole new world promised to open in front of me.

I now call shenanigans. Get the broom.

You see, in trying to leave a better footprint behind me, I have inadvertently opened myself up to having any misunderstanding or differences of opinion can be laid at the feet of my faulty filters. I don’t believe it’s intentionally unkind or dismissive, but it remains extremely insulting.

It’s as if learning that about me gives others some sort of legendary weapon in discussions. After all, it’s far easier to close the issue without examining anyone else’s behavior, because, hey, here’s a trump card that I’ve handed over: “She’s upset because of the way she neurologically processes things, not because of anything I did or said. There, that’s settled.”

It’s become a litmus test for me, finding how different people try or don’t try to connect with me. I don’t even bother telling people about my distortions at this point, since so many people have them but don’t see them or understand what they are or how to start the slow process of disabling them. (Hint: You can do it.)

 

Soul
It’s amazing how much easier your path can seem when you realize many around you are on the same path, trying to overcome their own stuff. Everyone has their own distortions, I’m finding. Since there’s no point in waiting on judgment or acceptance from others, I’mma just keep moving, doing my own thing, my own way. T-Pain says I can’t go wrong.

Call it chasing silver linings. (So fun!)

Call me Little Mary Sunshine. (Mary’s a lovely name!)

Whatevs, I’ll just keep trying to get through life with as much love, bliss and laughter as we can Katamari.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In that vein, check out my adorable Great Niece #2, Baby A. She’s about a month old and I get to meet her next month when Lil Momma (my far off niece) returns with her family for a visit. Oh, the excitement!

100% All Natural Burning Kyooootness

100% All Natural Burning Kyooootness

 

Hope Fatigue (and Silver Linings)

Author: Vivid Muse  //  Category: Health, Whining

I have health issues. This is not news. I call them my Health Blahs and being overweight my entire life, I’m not terribly surprised, other than the timing. No, the real surprise lies in how much can hit the fan in just a couple of years. I remain tremendously grateful that I’ve had only chronic conditions diagnosed, as opposed to life-threatening or terminal. I know I’m lucky and I count my blessings to the point of what must be near-tedium for those around me the most.

Chasing silver linings, I call it.

Some new health wrinkles have made life super interesting for the last six months or so. Because of the new onslaught of testing that they triggered, I recently received news that a biopsy was negative, all clear! I was thrilled and let my terror level on the issue drop almost completely. One less thing to prevent me from getting back on a physical training regimen.

There is nothing new wrong with you, thank God. Keep your hopes up, everything’s okay! It’s not cancer!

*deep, cleansing breath*

Then, instead of the usual skip in my step and a lightening of an invisible lead weight, I slumped under the weight of utter and complete exhaustion. The good news just kinda broke me. It was very confusing. I thought it was one of my wacky neurological reactions by way of relief, but I found myself unable to shake it.

“Great, now I have to be happy and hopeful again.”

The thought of bearing the weight of hope again was a surprisingly daunting task this time. And obviously, this reaction is a curse amongst those of us that follow the path of the Silver Linings.  You give people, places, things and events the benefit of the doubt, every time. You respectfully give encouragement where it’s allowed. And whether vocalized or not, you forgive. Give things a chance to work out, even if not exactly in the way we hoped. When in the darkness, allow yourself to see the silver linings and you’ll often be blinded by their brilliance.

And life is really damned short. I know I say it all the time, but it really, really is. Tragically short, no matter how long you live. How could you not seek light in dark times? Find the silver linings, name them and follow each of their fragile trails. Nourish them and feed them hope. Otherwise, how can you even breathe in the universal horror and aftermath of so many tragedies and hardships of humanity, as well as in personal relationships in recent years.

Yes, hopes get dashed. I don’t count disappointments like I do blessings, but sometimes wonderful people do unkind things. Sometimes test results don’t go your way. Sometimes things go wrong, with or without a person to blame. And sometimes, you get tired of re-lighting a candle that keeps getting snuffed.

It’s the first time in my life I’m feeling a real urge to go dark, as in, take a break from Hope and Silver Linings and all the disappointment that they bring. Take a break from social media and the boost it usually gives me – less isolation to make me cray-cray and what-not. Skip Balticon and other gatherings of friends. Hibernate, until the stings are faded. But, even in the comforting lull of solitude and quiet is something trying to kick me out of the dark and back into motion…

… captivating high-pitched giggling from upstairs; plans for LT’s summer visit have solidifying; a happy and smitten; dreams of a visit by J; opportunities for time with far-flung family and friends which guarantee face-breaking smiles and joy; making new friends; countless loving gestures and endless patience from my husband; an increase in time with  joyful little kids; unspoken dreams and downright plotting; plans for seeing my distant niece and the family she’s made; glorious spring days with my husband’s hand in mine as we watch Kaylee frolic like a puppy…

Realizing that even when the day is ending with the sun going into hiding for another night, we are still given a view that has inspired countless people with its beauty, a spectacular image to carry into the darkness with us. Burned into retinas at times, and others, it’s just the idea. The knowledge of what awaits them if they care to turn their eyes towards the upcoming dawning light. The darkness is bookended by a brilliant show of nature, eternally promising light and warmth. The night is long enough that we appreciate dawn when it comes, and short enough that we can easily hold the memory of sunlight against the dark night. You don’t even have to have hope for it to happen. It just will.

Going dark would be a real struggle, is what I’m saying. Isolation speeds the process, but it’s not a fun one to live with, and I won’t do that to Chooch or our Housies. And I can’t when I’m around our kids. If only it were the right time of year for a good sulk in a cave somewhere.

Instead, I’m setting limits on time and expectations (more on this when I’m feeling less fragile) and counting spoons. My shrink had to remind me to save one each day for myself. Can’t believe I forgot about that, but I’m now saving two each day: one for me and one for Chooch. And when we are with our sons, I’ll also save a spoon each for them. I mean, if I can’t take care of those that give me a reason to push myself out of the dark, what’s the point?

And yes, I’m exhausted, but as I brace for another appointment, I’ll sling my bag of Hope back on. I always do, and with beloveds like mine, it’s not actually that hard. Just…

urrgggggh

The Spoon Theory by Christine Miserandino

Author: Vivid Muse  //  Category: Fibromyalgia, Too Long For Twitter, Whining

Finding myself in a whirlpool swirling with information from recent web surfing in Health Blahs (my name for my mixed bag of health challenges), and a few have really stuck with me. In my last post, I shared a find on techniques to improve memory and fought with myself about doubling up the goodness. I chose to split the two fave finds from that excursion, mainly to allow myself  more time to digest the second post.

The Spoon Theory, by Christine Miserandino has been percolating for a week now, but I am still thinking this is a pretty damned fine way to explain the daily challenges, preparations and planning I need to be comfortable and less needy for whatever may come. Even my therapist, T-Pain, as I call her, suffers from chronic pain and couldn’t find fault with it. To me, the explanation just sings many of the concepts I can’t express. 

Obviously, you have to suspend disbelief that you have any tangible way to predict with any certainty what the day has in store for you. Preparations are made and plans are laid to minimize chaos wherever possible. Much of the time, precautions taken end up not having been necessary. But, many times it’s just having done the preparations that gives comfort, rather than any actual need having been met.

Familiar folks: You’ve heard my whining before. Any new folks: I struggle with pain daily. Many that I’m close to also suffer from chronic pain, or love someone that does, and there is a sort of short hand when talking about such things. Traditional follow up questions to someone revealing a new health issue are suspended with an immediate and sympathetic acceptance of the news. This is typically met with a wave of the hand or a “Yeah, yeah, yeah. Anyways, …” It’s a shared experience. No filler words needed. Yadda yadda yadda.

But for those that don’t really get it, I find that it is tough to find a common language to have more than a superficial conversation without struggling to explain a response that is not standard.

As for what I mean by struggling to explain, for example, being fat (No platitudes, please? We’ve grown beyond that.) and not talking about being miserable/ecstatic on a diet and/or exercise program of one kind or another, I find that I am typically greeted with a sympathetic/energetic encouragement to get back into that cycle. If I, in a moment of honesty to strip away a lengthy avoidance resulting in no real conversation occurring, reveal that no, in fact, I really shouldn’t run. As in, I’ve been advised against doing the healthiest and most successful, enjoyable exercise I’ve ever done, I almost always regret it. People don’t really want to go there – to hear that will power can’t always get you through things. It’s terrifying to think, after a life time of doing, doing, doing. So, I find myself greatly censoring conversations to avoid going into that whole realm of explanations and we all have a good time.

It also appears with the standard, societal question, “And what do you do?”
*cringe*

Stray Thoughts

Author: Vivid Muse  //  Category: Too Long For Twitter, Uncategorized, Whining

I’m wondering why it is so hard for some of us to take our own journey. Even when lucky enough to have a partner, I hesitate before stepping on the path of another for fear that my footprints will leave an unwanted mark. It’s happened in the past. And I know it’s my fault because they told me it was (Haha, yes. I’m working on that, too.).

Now, I excel at finding silver linings and rainbows. I do it at every turn now. It makes a difficult process or period of time a bit easier, sometimes. Sometimes, not so much. But when feeling adrift and buffeted on all sides by storms, where does one turn? Speaking for myself only,

I get lost in the rhythm of the waves. It’s mesmerizing, don’t you think? And by studying them, you can learn from them. Hopefully something that makes the storm worth bearing. Most storms come and go without us ever learning such a thing, like what caused it or how it can be prevented in the future.

But, eventually, I find myself looking up, so the sky analogy works really well for me. (Religious notation: I was raised Roman Catholic; gave up on the preachings of old white men long ago and am currently researching Buddhism. I look up because that is where I instinctively look when talking to my deceased Mom, who is the person I “pray” to.).

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I have been assured that I have strong intuition. I have an overwhelming urge to believe this, as so many come to me for advice. Why, I have no idea. I’m as lost as sea as the next poor bastard.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Why does parenthood have to be SO hard?
It’s like that film in middle school about body changes and sex and stuff, before you can grasp any of it (if you’re lucky), because you’re at an age when it’s biologically possible to get pregnant.
It’s that terror-filled moment of: “I can’t wait to see him” alongside the fear that I will negatively imapact his journey. That I’ll say the wrong thing.
It’s like, in the words of a very wise man, grape on the outside and salty on the inside. (Yes, I’m working on it… ^-^)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I find it un-fucking-believable that nearly no one I see regularly, as life finds me now, ever met my Mom.
How is it possible that so much of my life is utterly separate from hers?!?!
That what was, when she left, is now gone.
Irrevocably.
Exquisitely.
Excruciatingly.

*sends up a red balloon*
Frakkin’ holidays.

Time Heals All Wounds? Meh.

Author: Vivid Muse  //  Category: Breast Cancer, Family, Mom, No Whining, Whining

Today is my Mom’s birthday.  Somehow, the math shows that she would have been 70. It doesn’t seem possible for her birthday and not her to make it to a new decade and new things that the public would allow for her to complain about. Aches, pains, less patience with the horrible people that you encounter during a random day. All the stuff society deafens an ear to, but doesn’t disrespect them for. She would have met her first two great-grandchildren and would be rubbing her granddaughter’s belly in anticipation of the one on the way. It’s unfathomable to me that these beloved children were never held in her arms. Surreal.

I was going to choose today as my first time intentionally not going to her grave on a significant day. (I certainly haven’t made it for every birthday, Mother’s Day, death day and Christmas, so don’t try and paint me with a Sainted Daughter brush. Illness or other issues sprang up and prevented me on those occasions that I did not make it. This is just the first time I made a decision to not go.)  Kind of a tip of the hat to all the progress I’ve made in therapy, by honoring her here instead of at her graveside, where it honors her death, not her life. But LT wants to go, so we’ll go.

As for the title of the post, I was reflecting on how we had to do math to figure out how old she would’ve been. And we did it several more times because the milestone aspect of the year was like a kick to the babymaker. So, I guess time “heals” all wounds, if you mean that you forget just enough to feel a bit guilty. I’ve also recently discovered that I couldn’t remember the final chemo (clinical trials) primary drug name that I believe shortened her life by at least 3 months, so good was it at destroying every living thing in its path, including most of my Mom’s remaining abilities. (No, I’m not litigious, she knew what she was signing up for. But I remain pissed.) I remember it now, but the fact that for even a few weeks, I couldn’t recall it –I was stunned.

Whether because of time or my terrible memory lapses, I’m forgetting things about her. Hopefully just the unpleasant things, but even if I do lose more, there are a kajillion wonderful and loving memories there. I really only need a few, preferably the ones with her arms squeezing me in a tight hug. That and her laughter are the things I miss most. I guess I’ve reverted back to being a little girl where she is concerned. It really is the stuff I miss most. Hugs and giggles from a woman long gone, but wow, did she leave a mark on those that loved her.

I write this guiltily, as I have loved ones that have lost their Moms, too. Some that have been grieving as long as I have and may still be in or just coming out of the denial phase and some who are just starting to fear the grief coming their way.

A little girl, far too young, that has found maternal nurturing in her step-mother, Thank God. I still miss her Mom, tho’, as our friendship was only just reaching full bloom. The young girl is immeasurably happy in her new life, and the memory of her mother is respected and kept alive.

A beloved friend of mine, with the loss of her Mom so fresh that I am at a loss on what to say and can only seemingly give physical comfort. I remember what that feels like when you have a bond as close as theirs, and I remember that nothing anyone could say could soften the blow. All I can suss out to do is hug her a lot and say, ‘I love you,’ as much as possible.

Another loved one, who lost her Mom around when I lost mine, is a Mom herself. She had a biopsy yesterday, so we are praying and waiting out test results. Additional prayers are welcome!

A childhood friend and former sister-in-law has had a recurrence of breast cancer, she’s a Mom of two and their Dad died previously this year. The cancer is spreading quick and I don’t even know what to pray for anymore, other than peace and no-pain for her and her family. Okay, and a miracle that cures her. (Dream big or go home.) My Mom loved this woman, too, and I know she’s fighting for those babies to keep their Mommy as long as possible.  Any positive energy you can spare her way would be immensely appreciated.

If the urge strikes, maybe you could throw out a prayer, energy, vibes, best wishes or whatever you feel appropriate to any or all I’ve listed, or to women or men in your life struggling with loss. It’s pretty fucking ridiculous that I know this many, but in truth, I know of even more fighting for their lives or supporting someone in the fight to survive. Having been a support system during such a time, I know it takes a toll. I’m sending out positive energy, strength and peace your way. And hey, don’t wait as long as I did to get help with all you are seeing/experiencing. It’s a real mother fucker to dig out from under years later.

Tonight we honor her by having dessert first. LT has requested an ice cream cake, and we are picking it up on our way back from Arlington Cemetery. Today we celebrate her life, laughter, joy and love for her family.

I’m the wee one in the middle of the picture. It’s the earliest I have been able to find of her holding me, with my adorable brother happily taking the Big Brother moniker.

The mimosas are indeed in bloom. Love you forever, Pocket Mom.

 

**Apologies for any spelling or grammatical errors. I don’t have it in me to proofread this.

My Review of The Avengers **Spoiler: I Haven’t Seen It and I’m Whining About It**

Author: Vivid Muse  //  Category: Fibromyalgia, Vestibular Migraine, Whining

Boring backstory:

Having been dealing with neurological issues for over 2 years now, and with the Fibromyalgia diagnosis recently, I have finally yielded in the struggle against my limitations in the arena of movies and video games. Lookit, I hung in there a lot longer than I should have. I saw Scott Pilgrim vs. The World THREE TIMES in movie theaters, in spite of migraines, dizziness and nausea. And I never even saw the end boss fight with Gideon until a few months ago on a crappy old CRT television. I had always, in the theater and on high def screens, had to cover my eyes.

“Just keep closing your eyes on those scenes,” you say. “Big deal, buy your ticket and quitc’her whining!”. And I do. But, as my eyelids are not light-proof (yet), the flashing battle scenes pulse, muted, through my lids into my noggin and it hurts. Bad. And usually for a long time after.

So I have resigned myself to only putting myself through it in case of extreme emergency, like Harry Potter’s final movie installment. After watching multiple trailers, I decided I was going to have to wait until this one hits the small screen.  But I have been house-bound for the better part of two weeks, and am nesting in our new space. As a result, Chooch saw The Avengers with housemates Phil and Tina on Sunday, after dropping me at a nearby Target.

Guys… I was able to spend their entire viewing time… shopping. This does not sound like a big deal, but bear in mind that I am not driving right now. The combination of my symptoms, medications, side effects and onset of more Fibro issues make it unwise, in my opinion, and I’d rather be hobbled than risk injuring anyone.

Today I got everything I needed for this phase of rebuilding after the sale of our old home, and for preparation for LT’s arrival next month. Yes, I said LT’S ARRIVAL NEXT MONTH! The ticket has been purchased, and we are hoping for a wonderful fun-filled summer with him.

Back in the car after they picked me up from my shopping excursion, I felt a LOT of pain, both migraine and what felt like every joint between my toe nails and my hips. But it felt so good not rushing in an effort to prevent delays for the person driving. And it felt good to feel like I accomplished some things, even if they just moved from one category to another on the to-do list. This has really become a Big Deal for me. I usually hook a ride with people going here or there, and cram all I need to do in a short time.  I invariably forget things and it becomes a hassle, so shopping has become a big stress for me.  Shopping with a 2.5-ish hour timer? Heaven.

Hearing them describe the movie, I was more saddened than at any other point, especially as Tina described how there are some movies you just have to see in the theater for special effects, and I do and always will agree with that sentiment whole-heartedly. I just wish there was also a less-spiffy version for those of us that can’t handle all the special effects and high volume soundtrack at the same time, but would happily spend money seeing it on opening weekend. I have always been willing to ante up for 3D and IMAX when worthwhile? Well, now, I’d pay extra to see a visually muted version. (Insert the “Praise Baby Jesus, it’s not cancer or lupus” mantra here.)

It’s a hard thing to settle for, but I am the mom that had her husband and two sons take her to Iron Man on Mother’s Day, years ago. I miss midnight openings. I miss the kerfuffle.

I kept asking for more details from them about The Avengers, and I became aware that although I was very jealous as a result of my necessary decision, I decided to feel satisfied that I accomplished useful things today. I think this is what “Realizing Your Limitations” feels like.  It’s something I’m supposed to be doing. And, in truth, it’s helping me get through the day, but I sure as hell don’t like it.